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NED no more :(

NewDay

Posts: 273
Joined: May 2012

Feb 07, 2014 - 2:14 pm

Well I just returned from a trip to MD Anderson. I had been having trouble getting my insurance to approve my 6 month scans, so I went to see an oncologist there that specializes in the rare forms of kidney cancer (mine is unclassified) in order to find out my chances of recurrence and how often I really needed scans. He told me the chances were 40% over 10 years and, when I asked what kind of treatment would be used if it did return, he said that the FDA approved drugs are not effective on the rare types. Well the next day I went back to see him for my scan results, and he broke the bad news. I now have mets to the lungs. So much for my 40%. He says that I do not qualify for any trials. He is recommending I try Sutent or Votrient. He said he was leaning toward Votrient because it is better tolerated. He recommended 2 oncologists closer to home. I live in Athens, Ga and work in Atlanta. I was surprised that one of them is in Athens. The other is at Emory where I had my surgery. Both are graduates and fellows of MD Anderson but neither specialize in kidney cancer but we don't have any in Georgia. I have an appointment with the Athens doctor Monday. We will see what he thinks. I'm starting to search for posts where people have discussed both drugs to learn what I can about side effects.

I'm concerned about trying to work if the side effects are rough. I'm hoping they will let me work from home until I see how it goes since my daily commute is 3 to 4 hours a day. I don't even know if I want to tell people at work. I know people feel awkward, not knowing what to say.

I haven't fallen to pieces yet. Maybe it just hasn't sunk in or I'm tougher than I thought. Right now I'm up for the fight, but I'm letting you all know that I've suffered from cinical depression for many years which is right now under control with medication. But, don't be surprised if my posts get gloomy on bad days. Just bare with me.

One more day on the roller coaster. Have I ever mentioned I always HATED roller coasters. They scare me. I once saw an actor on TV who was talking about a period of time she suffered from agoraphobia, afraid to even go out of the house. After therapy, she learned to say to herself: "Do it afraid." So, scary or not, I'll do it afraid if I have to.

I know I'm new to this board and tend to be a lurker but my thoughts and prayers go out to you in your fight. As someone that has struggled with anxiety for most of my life I have a lot of experience being afraid. If there is one sliver lining in my cancer its that I don't care that I'm afraid anymore and that makes me less anxious, or maybe that's just the prozac kicking in. Oh, I hate roller coasters too. Good luck!

The more you "Do it afraid" the less afraid you will become. Tearing down a wall of fear one brick at a time is required by every member of this club, you're just going to earn another patch. I think Ron was encouraging you not to take no for an answer, fox refused to to accept it and is approaching the second anniversary of his expiration date. You can do this, you are a survivor, you are a warrior.

Waddle, waddle, quack, quack. Sounds like you are getting your ducks in a row for the next trip of a lifetime. Good luck as you research all your options and know that we care what is happening to you.

Hope you've thawed out on the east side...we've got anywhere from 2-10 inches of snow here in western Oregon.

this Kathy. You've got our Karma coming in from all directions. So don't be afraid. Turn that energy into aggresion. We won't run out of support so don't you back off from digging in your heels. After you see your MD's, and have a plan in place, go at it full blast. You are not alone. We aren't going to let you down. Keep us informed so we can assist with information and with the results that others experienced with the treatment you choose.Remember we care. Fox.

Kathy, you can do whatever it takes. You are strong! Probably stronger than most of us! I'm 9 mos out from my surgery, and they found nodules (all the report said was " numerous pulmonary nodules bilaterally") in both lungs. The largest one is in my left lung and while it is large enough to biopsy, the risks outweigh the benefits, so we watch and wait and scan and wait some more to see if it grows or if any of the others grow. It is what it is, and I can't do a danged thing about it 'yet'.....so, I have to trust my doctors and do all I can to not worry too much. I'm just now starting to get used to the roller coaster. I'm also waiting for the results of my brain MRI that I had this week. Just another one of those 100 ft drops straight down! I think I'll turn loose of the railing and raise my hands up really high and scream through the next drop! Heck, everyone else will be screaming, too, so they'll never notice one more, right? In the meantime, barring rain, I'm taking my little red Miata, with the top down, and heading with my sweetie to the seafood festival in Everglades City this weekend! Listen to some good live music, eat some good seafood, and get a little sun! Y'all have a good weekend, too. I might even have a beer if it's really really a cold beer...like almost slushy.

I am sorry to hear your news! If it's any small comfort to you I know how you are feeling, I had similar news recently. Take it slowly you don't have to rush things, give your mind time to absorb the information, don't put yourself under more pressure than you can cope with at any one time! It will help you to calmly study your options!

Hi Kathy. Sorry to hear this. You post anything gloomy you want anytime you feel like it. We've got your back. I've had depression off and on for a long time as well. Talking about it helps me. Being alone inside my head is not a pretty place to be, so please post and share.

I have you in my thoughts and wish you the best as you move forward in your treatment.

Thank you so much for posting. It really makes me not feel so alone, especially since I live alone.

I met my new oncologist today. At least he has an aggressive plan. He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it. He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing. I have read some posts where people here have had more than one type of cancer. He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing. That may help narrow down the type of treatment I should get. In the mean time, I will start on Votrient. He thinks I will qualify for some trials. He pointed out that, because my tumor is so rare, they have no way right now of knowing what will work. At least I feel he is doing all that can be done. He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out. It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

Thanks again for your support. You are aweome! I'm still hangin' in there.

Lots of old friends on this thread. Fox, David, and............... Kathy.........................look what you've been going through. I think I've been away too long. Michael, Iceman and I know for sure Alice is lurking in the wind somewhere. Brea still praying for everyone. Hope you guys didn't send me down for the "dirt nap". I've been here. Keeping up and handling some family business. If you'll allow me I'd like to get back to some of this family business. I've missed you guys. Cannot tell you how sorry I was when I signed on and got the news about Tex. Heartbreaking. I will miss him so.

So, how's everybody feeling? Anybody in the mood for some inside info so you can take my thoughts in to your Dr's office.....spend a ittle time slapping him around like the old days? They hate when you know more than they do. Make yourself feel good. We were always good at that. Anyway, I feel back. Hey......and that Roller Coaster crap..............I grew up going to sleep with the Cyclone every night.

Jeff - So good to see you back. For those of you who haven't had the pleasure, Jeff is a wonderful resource. When he was here earlier, we soaked him to the bone with questions about scans, MRI's, and medical jargon, foreign to many of us. Honestly, I didn't blame him for going MIA. Anyway, glad you're back Jeff.

Sorry to hear what you are having to deal with,i remember when you first signed on and shared your situation with everyone and that your prognosis at the time was not the greatest one oh and i do hope you are eating more healthy by now.Well as Texas would say keep your chin up and i will be keeping you in my thoughts.Also hope you qaulify for some trials and get some awesome results.

Sooo glad to see you back. You get worried when someone drops off that things may have taken a turn for the worse. What a relief! I do have a question. Why is it that you can have a two page scan report that mentions densities in the lungs, a calcification in the liver, foci in the uterus and miscellaneous things and then your next scan says absolutely nothing. It just makes you suspicious that the radiologist was too lazy to do a thorough report which then makes you wonder if there wasn't something there and he missed it. Just wondered.

Ron, DSFrey, Eliezer2, Gary, Donna, JoJo, Fox, Tillie, Djinnie, David, Jan, Todd, Brea, Jeff, and Limelife, look at all the people that took the time to encourage me. Thanks so much to all of you. It makes such a difference to know there are people who understand and care.

As far as eating better, I can say that I'm eating more. I did gain some weight back, but still have gastroparesis so I can't eat much. I'm afraid I can't claim to be eating better. That is a new year's resolution that hasn't come ot pass yet. To make it worse, my new doc says he needs me to put on some weight, I guess because he said I can expect some nausea with the Votrient. So, now I'm taking in cholcolates and chocolate donuts. There must be a healthier way to put weight on when you can't each much. I'm sure Neil could offer some advice.

Hi Kathy. Even though I advocate a low carb diet that does not mean a "no-carb" diet. There are healthy carbs that are good for you and will allow you to put on weight - if combined with a healthy mix of proteins and fat. Healthy carbs are non-starchy vegatables (all the green leafy ones for example). However, you can add some potatoes or rice to the mix (pure starch for the most part) and see what amount allows you to put on weight and/or maintain your current weight. What I do advise against are too many grains (whole or not) and cereals. And, of course, no added sugar(s), etc.

BTW, one or two squares of 70% chocolate is a perfectly fine way to end a meal. If there is not too much sugar in the mix chocolate and cocoa actually have anti-cancer properties that are well worth exploiting.

Regardless, each of us is different. You just have to do some experimenting to see what your body metabolism may turn out to be. But if you understand how various carbs (especially sugars) modulate how your body adds fat you can then plan accordingly.

When I first started out to change my diet my weight was 165 lbs (I am 5' 8"). After following a low carb diet I lost 35 lbs over the course of several months. When I got down to 130 lbs I decided that was enough and then experimented to see if I could add back 5 lbs following this approach. At this point I average 135 lbs. My wife is the happiest because we now eat all sorts of (grass fed) meats with our veggies and cook in healthy saturated fats like coconut oil, butter, and yes, even beef tallow. It's delicious. The biggest sacrifice? No bread and no pasta.

Please hang in there and realize you have so many fighting for you! When things seem to get you down, this is the place to come to get your pick up! We are all in the same boat and realize the emotions are on a never ending up and down! Wishing and praying for the best for you!

Sorry to hear about your lung mets. I just wanted to say that I am glad that you started on Votrient. The reason being that my mom, now 81, had several mets in both lungs, and some other areas, she is also "unclassified". Well, as you may remember, she started on Votrient in December of 2012. So far all is gone is except for one lung met which remains stable. So I think Votrient is the right way to go! Glad you are not having any side affects, Kathy. What dose did you start at? Be sure to ask away if you have any questions. You have been so strong and upbuilding to everyone here and we are all in your corner. I think you will do just fine! :) I will always remember the saying "do it afraid." It makes perfect sense! XXOO

Welcome back, Alice and Scanman!

Scanman....TW was asking for you not too long ago, wondering how you were doing. He missed you!

Hi again Kathy.. I did a short stint with Votrient.. I think it is a good choice for you. It is often pretty easy... you did need regular blood tests to check for elevated Liver enzymes, and you need to check your blood pressure daily, twice daily even better. Otherwise, expect some diarrhea and fatigue. Hopefully nothing worse than that... I see that Votrient is now being tested for other types of Cancers, which is another reason I think this is a good option..

I understand living alone.. me too... so we are our own Caregiver and cheerleaders... except I have ugly legs.. heh... Oh and you have your best pal there... Maybe time I get a pet again...

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